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[HGPI Policy Column] No. 19 – From the Dementia Policy Team – Examining the Situation for Early Consultation and Diagnosis

[HGPI Policy Column] No. 19 – From the Dementia Policy Team – Examining the Situation for Early Consultation and Diagnosis

Key Points

Recent studies have shown that both medical examinations for dementia and dementia diagnoses have decreased in number due to the Coronavirus Disease 2019 (COVID-19) pandemic.

A study that analyzed barriers and facilitators for dementia detection and diagnosis found that members of the general public, people with dementia, caregivers, and healthcare professionals were affected by different factors.

When considering future measures for promoting dementia consultations and detection, elaborate planning will be necessary to determine who to target with which approach while taking the aforementioned findings into account.

 

Introduction

Almost one year has passed since Coronavirus Disease 2019 (COVID-19) began to spread worldwide. Recent reports have contained signs that the number of infections going back up, particularly in Europe. Not only are lockdowns being implemented in Paris and London, the number of people testing positive in Japan is trending upwards as well. The situation remains unpredictable as the northern hemisphere enters the winter season. As COVID-19 continues to have significant effects on life in Japan and around the world, we must continue living with major disruptions to our everyday lives.

Although it has been mentioned several times in past columns, people living with dementia are among those facing the most severe effects from the ongoing COVID-19 pandemic. In September 2020, the Alzheimer’s Society in the UK presented a report entitled, “Worst hit: dementia during coronavirus,” which described the effects of the COVID-19 pandemic on people with dementia in the UK. Many similar reports have also been published in Japan, including a survey of dementia specialists conducted by the Japan Society for Dementia Research; a member survey conducted by the Japanese Psychogeriatric Society; and a survey conducted by a team led by Professor Shinya Ishii at Hiroshima University Graduate School of Medicine’s Symbiotic Social Medicine Course. With the release of each survey, the effects of the COVID-19 pandemic on people with dementia in Japan have been gradually revealed. While detailed results for each survey can be found in Japanese at the provided links, each one clearly demonstrates how the COVID-19 pandemic has affected the everyday lives of people with dementia by restricting their activities or by forcing them further into social isolation. Another common thread across each study was that the pandemic is causing those most affected to experience worsening cognitive function and greater symptom severity.

Meanwhile, a survey of dementia specialists found that opportunities for people with dementia to receive consultations has decreased. When I discussed this topic with medical professionals working on the frontlines of healthcare, they reported similar experiences to the findings of that survey, and that they had the impression the number of outpatient visits and dementia diagnoses was fewer than the average year. It may be safe to say that the effects of the pandemic have been just as bad or worse on some of us, and people with dementia in particular, than COVID-19 itself.

 

Our White Paper, A Social Prescription for Dementia – Enabling Early Detection and Diagnoses through the Building of a Dementia-friendly Community”

Given the current circumstances, we expect the number of consultations for suspected cases of dementia and dementia diagnoses to increase after the end of the COVID-19 pandemic. While we believe that shelter-in-place requests and other social distancing practices against COVID-19 are suppressing the number of consultations and diagnoses, we must keep in mind that it will be important to have an understanding of factors unrelated to the pandemic that prevent people from seeking consultations and diagnoses when considering future measures to encourage consultation- and diagnosis-seeking behavior.

One attempt to analyze those factors resulted in the creation of “A Social Prescription for Dementia – Enabling Early Detection and Diagnoses through the Building of a Dementia-friendly Community,” a white paper by HGPI in October 2017. That paper was split into three sections: interviews with world-class dementia specialists, a review of evidence for early consultation and diagnosis, and introductions of noteworthy case studies from Japan. In summary, it defined a “prescription for society” in which local communities must serve as the foundation for efforts to develop society as a whole and concluded that such a prescription is a critical element for building a society in which people can feel hope. In this column, we will review the results of literature on the first of its pillars, “Barriers and Facilitators for Detection and Diagnosis of Dementia.”

                                                                      

Introducing the Andersen Healthcare Utilization Model

In our literature review, we selected 135 relevant English articles published from January 1981 to October 2016 based on the content of their abstracts or text that we then then analyzed. (For more details about our selection method, please refer to the section marked “III Review of Evidence – 1-c. Theoretical Framework” in the white paper.)

The articles were then analyzed using Ronald M. Andersen’s Andersen Healthcare Utilization Model. In that model, the behavior factors of people who use healthcare services are categorized into three types: predisposing factors, enabling factors, and need factors. Predisposing factors refer to the characteristics of the individual in question, such as their age, race, family structure, education, occupation, and attitude towards health. Enabling factors refer to the environment surrounding the individual, such as whether or not they have family support, if they are covered by health insurance, and the availability of services like community resources. Finally, need factors are related to an individual’s awareness of their needs towards healthcare services or if they require services in which a specialist such as a healthcare provider determines their needs for them. In addition to medical service utilization, the three factors in this model allow for broad analyses that can also examine health and long-term care service utilization. It is also said to be useful for generating easy-to-understand results that capture user perspectives because it is based on the behavior processes that lead to healthcare service utilization.

 

Barriers to Early Dementia Consultation and Diagnosis

In addition to the three types of behavior factors outlined in the Andersen Healthcare Utilization Model, our white paper also included a category for factors in the external environment. We then identified factors that act as barriers to early consultation and diagnosis for dementia within those categories. Details can be found in the following table.

Group

Obstructing factor category

Factors

Members of the general public and people with dementia

Environmental factors

  • Problems related to access to healthcare service access: Geographical distance, lack of transportation

Predisposing factors

  • Negative attitudes: Denial, negative emotions, and skepticism
  • Communication: Language, health literacy, cultural beliefs, and communication with healthcare providers
  • Sociodemographic factors

Enabling factors

  • Insufficient knowledge or awareness
  • Social prejudice
  • Problems related to access to healthcare services: Financial restrictions, lack of health insurance

Need factors

  • Autonomy
  • Health and disease status

Caregivers

Environmental factors

  • Problems related to healthcare service access: Lack of referrals to specialists, time and language-related issues

Predisposing factors

  • Negative attitudes towards dementia, dementia screening, and caregiving burden

Enabling factors

  • Insufficient knowledge and awareness towards dementia
  • Insufficient knowledge and awareness concerning treatment
  • Social prejudice
  • Access to healthcare services: Cost
  • Social support

Healthcare professionals

Predisposing factors

  • Attitudes towards diagnosis, treatment, and caregiving burden placed on healthcare professionals
  • Negative attitudes towards dementia, screening, diagnosis, or role of Government

Enabling factors

  • Insufficient knowledge or awareness
  • Insufficient time, money, or methods of providing appropriate healthcare services

(This table was creating using excerpts from, “A Social Prescription for Dementia – Enabling Early Detection and Diagnoses through the Building of a Dementia-friendly Community.”)

Next, we will share our observations towards the barriers described in the white paper based on the characteristics described above. First are items shared across all three groups. All three groups were affected by “negative attitudes” among predisposing factors and “insufficient knowledge” among enabling factors. “Social prejudice,” “social support,” and monetary restrictions were decisive factors among members of the general public, people with dementia, and caregivers. Furthermore, when focusing on members of the general public and people with dementia, it is clear that environmental factors related to ease of access to healthcare services such as geographical distance to healthcare institutions and lack of transportation as well as socioeconomic factors such as education and income level had significant effects. Page 38 of the white paper explains, saying, “While these factors are not easily influenced by program activities, it is essential that variance in sociodemographic factors are understood and accounted for during program development.” 

 

Summary – Promoting Early Consultation and Diagnosis

In the future, we expect that efforts to make up for delays consultations and diagnoses caused by COVID-19 will be made in every region. However, blindly running public awareness campaigns to promote consultations and diagnoses will have a limited effect. Instead, it will be necessary to form a strategy that takes into account the best methods of communicating the importance of consultation and diagnosis based on the characteristics of the targeted organizations. As made clear by the observations shared above, while there are factors that we can expect to influence through methods like communication from the Government or healthcare institutions or by implementing educational programs, we must also understand there are factors that land outside of the scope of dementia policy, such as access to healthcare institutions or socioeconomic status, and that these will require a long-term approach.

Finally, we must not forget to prioritize providing support to people with dementia and people who suspect they may have dementia. In recent years, interest is growing around the world towards efforts to develop dementia-friendly products and services and to provide them to the people who need them most. Designing for Dementia is also working to promote such efforts. In order for the providers of those products and services to have a deeper relationship with users in the future, we believe we must come together to plan, build, and evaluate systems for providing consultations and diagnoses as well as to identify the ideal methods of providing long-term care services and other services within the medical, nursing, and welfare fields.

 

Works referenced

Health and Global Policy Institute, McCann Global Health. 2017. A Social Prescription for Dementia – Enabling Early Detection and Diagnoses through the Building of a Dementia-friendly Community.

Kobayashi, T. 2015. “The Concept of Context in the Andersen Healthcare Utilization Model.” The Journal of Human Relations, 17, 55-63.

 

About the author
Shunichiro Kurita (HGPI Manager; Steering Committee Member, Designing for Dementia Hub)


< HGPI Policy Column (No.20) -from the Dementia Policy Team-

HGPI Policy Column (No.18) -from the Dementia Policy Team- >

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